I am currently using fragmin, the dosage being 18,000. At a haematology appointment last week, the consultant suggested at my next appointment reviewing the dosage and maybe looking to reduce it. Whilst my consultant is not an APS specialist, they do have some experience of the condition and they are extremely sympathic to my needs and actually listen and take on board any concerns that I raise.

I was previously under the care of an APS specialist - before I knew I had APS, because I'd had a previous DVT - but because of appalling and horrendous care which resulted in me making a formal complaint, I transferred to my current hospital were my diagnosis was eventually confirmed.

I am loathe to change hospitals because the care I have received has been great, but I am curious to know if the dosage of fragmin should be reduced?

As we say on here many times, we are not Doctors and cannot give out specific medical advice on things like dosage. What I can say is that given you seem to be happy with your consultant I would not rock the boat too much. If your dose is managing your symptoms then things may well be not be too bad, Heparin has a very short life anyway. Also I don't mean to be too probing but some specialists will put their patients on a dose that is worked out on weight, therefore the larger the person the higher the dose. I asked Prof Hughes about this once and he told me it should NOT be done on weight.

If I were in your shoes I might be tempted to go along with this Consultants thoughts, have a frank conversation with him and tell him your concerns. Say to him can we have a trial of a lower dose and see how I get on for say 6 weeks and if I don't get on with a lower dose can I have your agreement that I can go back to the original dose.

I have always found that if you can work with your Doctors and have a understanding with them your relationship will work. If they don't know how you feel about things then how can they help you. Of course with a more dictatorial doctor that approach is never going to work which is why I would never stay with someone like that. You have the condition for life so its in your interest to find someone you can work with. You have come this far Im sure you can continue to do it moving forward.

Interesting to hear you say Prof H says it shouldn't be done on weight. Mine, also 18,000 units, was done on weight basis by my GP (for cover when INR low rather than instead of warfarin) and oddly enough, picking up a repeat script this morning, the pharmacist came out to check whether my weight had changed. Must look into this further as some in field are using weight to decide on dose.

I asked the Prof because I am on 10,000iu and this does not correspond with my weight. That was when he gave me the explanation only I cant remember what exactly he said now...typical! I think I did post it up on here but with all the changes HU have had its probably been lost!

Thank you MaryF, because of the experience of my previous hospital I have made sure that this time round I am always prepared, something my consultant says makes their job a lot easier.

Thank you APsnotFab. I fully appreciate no one on here is medically qualified, but the reason I asked the question was because like tim47, I was under the belief that fragmin was prescribed based on your body weight. But if prof Hughes who IS the expert says not, than that Is interesting.

Thank you for your advice about trialing a lower dose, I would never have thought of that.

As soon as I transferred to my current hospital, I knew I'd made the right decision because the consultant was someone who talked to you as opposed to talking at you, so I have always felt comfortable expressing my concerns and am therefore willing to work with them.

Thank you again for your advice and guidance which is much appreciate!

It is the standard of care to adjust the dose of LMWH according to body weight. Too little heparin and there is a risk of insufficient anticoagulation, too much and you increase the risk of haemorrhage. The practice may be different in APS, but I'd ask why is it necessary to reduce the dose?

It was just a suggestion made by the consultant hematologist to review the situation at my next outpatients appointment. I've only been on fragmin for six weeks, but I feel they are just being cautious because when previously on warfarin I had a suspected bleed (it's a very long story) and needed a blood tranfusion.

I was advised that it was based upon weight. I take 18,000 as well. I would imagine that weight is a good place to start initial dose after taking all considerations into thought. And… if patient is still having issues maybe dose is increased a little. Just speculation.. I'm not a doctor.